Thursday, April 24, 2008

Matthew on a swing up in Beaver ~ he was loving it! We were just toodling around the cabin. While everyone was "being a rock star" playing Rock Band on PlayStation, Matthew crashed in this most uncomfortable position.

Thursday, April 17, 2008

Update: I just got home ... it's 4:15pm. Well, the surgeon was not able to get the results he wanted. He and another surgeon spent 2 1/2 hours working on him. That's all I know for now. We are disappointed. It sounded to me as if this is just something he'll just live with. Before the surgery, he did say the node was in a tricky spot. When the nurse came out after an hour and a half, she said "it" was being a "real booger". Will know more later. Casey is doing fine, just nauseated ~ poor kid.

Today at 9am, Casey is having an ablation. This is a procedure that can be done via catheter in the cath lab.

Friday, April 11, 2008

Dr. Mayman figuring out Matthew's leak "numbers". It's rated a 2 now ~ which is kind of crazy because during his last ECHO it was a 3 and the time before that was a 4.So, we got great news today!(Sidebar: Once it gets to an 8 we need to talk about surgery and a 10 means surgery time.)

Waiting for the ECHO. Strapped up "halter monitor"... it's a little EKG machine he needs to wear for 24 continuous hours. He has little stickies all over his chest. This should be interesting!

Getting ready to listen to his own heart at Dr. Nakamura's. Dr. Craig gave him his own kiddie stethoscope.

Matthew's ECHO results could not have been better!!

Dr. Mayman said that it could be anywhere from 5 to 10 years before his next surgery! WAHHOO!!

Saturday, April 05, 2008

"twinko ... twinko ... litto ... tar!!" I almost passed out *big eyes* ... but first, I had to acknowledge that I knew what he was singing .... so I started singing it with him again. (He's never even SAID twinkle, little or star.)

I raced to the phone to call Mike ... he was able to hear him two more times...

Wow.. I am in shock.... it was SOOOO great!!!!!!!!!!!!!!!!!!!!!!!

I of course had to call his speech/feeding therapist Shay, to let her know .... she's a big part of why he's doing so well. Actually, all the girls from Nevada Early Intervention are the greatest and have worked wonders w/ Magoo .... Christy and Erin, too. We love them all. Kristina and Shirley have been a part of Matthew's care too, but are no longer his little helpers ~ thankfully we stay in touch. His services will end on his birthday, we will be so sad... these girls have been such a huge help to me and Matthew over the past 2 1/2 years.

Ethan and Matthew painting w/ cool whip. Ethan loved eating it.. Matthew wanted no part of tasting it.. shocker! This is Erin of NEIS at the table, she and Christy were the "play masters".

I know it's kind of dark, but it's so cute. If you look to the left, you can see Matthew's back in the striped shirt.. trying to make a getaway. You can see our friend Trish at the table.

Wearing daddy's baseball cap.

Just checking out how it looks in the mirror. His t~shirt is so cute, it says, "That's it, I'm going to Grandma's". His Grandma Sue got it for him.

All is fine around here. I know we've been lame about keep up the blog.

We had a fun little playgroup yesterday w/ the Nevada Early Intervention Team and little Ethan, he's almost 3. We're getting Matthew used to being around other kids ~ healthy kids of course.This was our third playgroup and it was quite fun and funny! Trish is wonderful for driving clear across town so Matthew can play with him during these supervised visits.

We'll go see Dr. Mayman (pediatric cardiologist) next Friday for his six month ECHO. As always, I get SO NERVOUS about those visits.

We also go see Dr. Nakamura next Thursday for a check up on the ole lungs.

Casey will be having ANOTHER ablation (cath) surgery on his heart on the 18th, not sure what time though. Hopefully he'll have better luck w/ no IV fluid dripping on the equipment cables.

Off to Beaver for a few days! We're excited about going, Matthew and I haven't been up in two months. Mom and LeRoy are going up w/ the motorhome tomorrow. It's always a good time in Beaver.

One boy's long road to recovery. Matthew was born two months premature with a rare fourfold heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's, and Ventricular Septal Defect. He's had two open heart surgeries and will need additional heart surgeries in the future.
To appreciate the absolute miracle of this "2 million dollar boy", you'd need to look into the "Archives" beginning after his first 9 hr open heart surgery at Stanford, August 2005.

First picture

2 weeks before he was born ~ we did not know of his defect until he was 4 days old

Day of birth ~ May 10th, 2005

4lbs 1oz ~ born at 32 weeks

Day of first surgery ~ July "05

"Unifocalization" ~ 9 hours by Dr. Frank Hanley

After first surgery

Chest was open for 4 days ~ hence the gauze on top

Chest was just closed

Still on a ventilator (remained on vent for another few weeks)

BiPap mask

Mask would assist him to breathe in and out

Getting ready for second surgery

Waiting for the surgery team to take him off

After second surgery

And still he smiles...

Leaving Stanford after second surgery

Happy day ~ Look no oxygen!

Happy Days

So much to be thankful for!

To view more pictures of Matthew while at Stanford, you can expand the year of 2005 by first clicking on the arrow, then the month. He was at Stanford from July thru September of 2005. Matthew was transferred back to Sunrise hospital where he stayed until the end of October 2005.His second open heart surgery at Stanford was March 16th of 2006.

We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.He's our amazing little soldier boy. Our miracle.